Ray, my “cue kid”, and I were riding in the car a few days ago.  We stopped at a stop light and I looked at the vanity license plate of the car in front us.  It said “GTHR LV”.  I began pondering what it represented.  I immediately thought that the LV might represent the roman numerals for 55.  That seemed logical since 55 is the standard speed limit and this was on a car.  But what would GTHR represent?  Get there? Got her? 

I was still pondering when Ray must’ve noticed me staring at the tag.  He asked “do you know that means”?  I asked him what he thought it was.  He said “That’s easy, Gather Love. They just left out the vowels”.  I realized a bit abashedly that he was right.  My son who learned the English language through Cued Speech is obviously better at phonemic awareness than I am.  I’m not sure if this a statement on how well he has internalized phonemic awareness, thanks to Cued Speech, or how poorly I have internalized it, but I certainly found it an idea worth further pondering. 

Sunday we had a grand party for Ben, a celebration of his graduation from high school.  My father, and all three of my brothers and family, attended.  W, Ben’s mom, had her mother and her three sisters in town for the affair.  Various players from Ben’s academic life — transliterator, DHOH and regular teachers, auditory specialist, tutor — showed up, much to our delight. Ben’s friends and their families were on hand.  Personal friends of mine joined us to share food and drink, reveling in the moment.

That point came in the celebration, as it does in many of life’s moments, when an acknowledgement of the event and its importance to those attending must occur.  Time for a quieting of the crowd, and for someone to say something.  Foolishly, I was unprepared.

Nonetheless, as host with Ben’s mother, we three stood apart and gathered every one’s attention.  Cueing and asking others to cue to some of the deaf guests, I welcomed and thanked all attendees, singling out special people, including the families on both sides, the great education professionals/supporters, and other dear friends.  It was heartfelt, but feel it was not too articulate.  I should have focused on the incredible journey Ben’s made, and the amazing distance he’s traveled in that journey.

The journey from the early traumatic days of his sudden hearing loss at three and half years old, hearing aids and the controversies and choices in deafness.  Quickly identifying the fundamental appeal of Cued Speech — literacy — and deciding that value was dominant.  Learning to cue, attending pre-school events, sending Ben at the age of four on a 45 minute ride to his school!  Eventually deciding on the cochlear implant, committing to the rehabilitation and testing to make it so effective.  Meeting Dr. Cornett, and spending time with the man who invented the literacy system of cueing.  The support and amazing skills of the Montgomery County DHOH professionals, from speech and classroom teachers to transliterators to parent support.  The journey from separate DHOH classroom for pre-school, to mainstreamed with support at the school with cueing, then totally mainstreamed (with transliterators and support) at our local elementary, middle, and high school.

None of this journey did I mention.  I should have been ready for the moment, but somehow in the swirl of the details of the party, it got away from me.  Foolishly, I was unprepared.

Today, running through the woods, rewinding the grand event, I was listening to music.  A song by the Dixie Chicks, Lullaby, struck me.  While it would not have captured the details of Ben’s amazing journey, the lyrics from that song, about a parent’s love of a newborn child, would have captured the essence of what I’d wished I’d said:

They didn’t have you where I come from
Never knew the best was yet to come
Life began when I saw your face
And I hear your laugh like a serenade

How long do you want to be loved?
Is forever enough, is forever enough?
How long do you want to be loved?
Is forever enough?
Cause I’m never, never giving you up

In some sense, life began when I saw Ben’s face.  And a unique life began when Ben lost his hearing.

I’m never, never giving him up.  Nor giving up on him.

How long will Ben be loved?

Is forever enough?  Is forever enough?

Should I talk of modeling romantic love as a single parent to my teenage youth, about to become ensnared in love’s confusions and passions?  Of Cafe Lady, a woman I have known for years, but only dated a brief period, ending with an odd abruptness?  Of the pain from the ending, the reemergence in my consciousness of absence, how I rue that I  have no one to share my life with?

Ben and Maddie have also known Cafe Lady for years, and we three enjoyed time spent with her while we were dating. They accept the end of the relationship, knowing that’s how things go, understanding that its ending is no reflection on them, knowing that among Cafe Lady’s many charms is a quality of warmth that maintains affection for them, only now from afar.  I do my best to be transparent with them, admitting to missing Cafe Lady and speaking of adventures we shared.  But I am very aware that it is not fair to burden them with all my emotional reactions to its ending, of the possibility that love had come to me?  And that love has eluded me?

So Cafe Lady has come and gone, and we three continue together.  Is there a lesson?  Or merely an experience?  One day we will have to fold new people into our lives, and my time with Cafe Lady (and her family) was perhaps a rehearsal for a show that one day I hope we can produce, each with another, and the others with us, in starring roles and supporting roles.

Should I write of future adventures, the trip Ben and I are soon taking to Rome?  Ben, my Latin scholar, the guy who knows all the Roman (and Greek) gods of mythology, jawing at me about the Republic and the Empire, heading together to the vibrant city on the Tiber.  A graduation present from me, a week in Rome, based in Trastevere.  Or should I mention my irritation that Ben has done no preparation for the visit, has not looked at a guide, has not suggested itineraries, not outlined possible adventures for the time in Rome, has not inquired into hours of museums and costs and days when closed, has not learned a single phrase in Italian?  Or how this specific lack of effort, or lack of imagination, or lack of curiosity about Rome seems to be too much a part of his general approach to the world?  And how that frustrates and worries me?

Should I acknowledge my concerns about a young man who seemingly never envisions his own future?  Is it a dearth of imagination on Ben’s part, an inability to articulate a way forward, or a complete denial of reality?  Is my role to push, pull, rant, encourage, hold the course?  Is this a parenting failure, or is Ben merely a late bloomer finding his way, with patience the best approach?  Should I indicate how fundamentally confident I am in my overall approach with Ben, but doubt keeps buffeting me as his maturation progress seems so minimal?

Here are random questions, from a man parenting a deaf son.  Will there ever be answers?  And, if so, will the answers generate more questions?

(PS  Many thanks for past comments!  Thanks for reading!)

What an exciting time!  It was then I recognized the value and impact Cued Speech could have in my educational environment.  As a child, I loved school and my hunger for knowledge was insatiable.  I got what I needed and thrived, yet I was facing an opposite reaction to college.  Frustration was high on the list of emotions I was experiencing.  Freshman year of college was rocky due to the inability to access my academic curriculum in the same manner as my typically hearing peers.

At LEAP I found the missing “key”.  While a personal FM system coupled with lipreading was an appropriate accommodation for me to access my education growing up in the public school system, unfortunately the same didn’t ring true in college.  The lecture halls were bigger, the professors “didn’t get it” and I was surrounded by new classmates who didn’t have the first hand knowledge of what to do with a deaf classmate who looked and sounded just like them.  I tried a sign language interpreter and although sign was effective for me in social situations, it just didn’t work for me academically, thus calculus, organic chemistry and marine biology became more confusing.  Although I tried, I’m not a native signer and I recognized that immediately.  I needed my instruction in my native language.

Cued Speech was a tool necessary to access my education, the education I was paying loads of money for; in my first language, English.  Yes, the cliche “Cued Speech opened doors for me” rang true.  No longer struggling to acquire lecture information or participate in group activities and discussions, I excelled in the classroom and was afforded the opportunity to fully immerse myself into my college community without worries of “What did I miss today?” or “What time is the tutoring center opening tomorrow morning?” hanging over my head.  The light at the end of the tunnel suddenly became visible again.  I found myself learning with ease, enjoying classes and loving college!

I bestowed this valedictory benediction on Maddie, my daughter, for years.  Gender specific, relationship specific, and then universal — girl, sister, child.

Maddie turned 15 yesterday, and time for me to sing her praises, not exclusively but especially as a sibling of a deaf brother.

At her birth, Ben had not yet lost his hearing to EVA, but would during 1995, within Maddie’s first year on earth.  But by the time Maddie was cognizant, she was bound to deafness — as part of our family, as part of her life experience, as part of her relationship with Ben, her older sibling.

I cannot recall each instance, it is so woven into our family, but many a time we must have told Maddie to tap or touch Ben, to get his attention, so we could cue to him.  We must have told Maddie to speak directly to Ben, face to face, so he could see her lips and expression.  We must have told Maddie to wait to talk, as Ben did not have his hearing aids or (later) his cochlear processor on.  We must have spoken and explained and elaborated upon an idea or theme to Ben — “red light,” which means we have to stop; “green light,” now we can go — with Maddie as captive audience, getting the repetition and explanation.  We turned on the captions of the TV, and have watched all videos and television for years with captions on, Maddie watching along with us. We attended open captioned movies, Maddie with Ben and me.

After the divorce, when we three traveled together, Maddie’s role was the more responsible back-up, based on her hearing.  Whether in New York, San Francisco, Toronto, Buenos Aires, or London, she was my assistant, aiding me in relaying information via cueing to Ben.

In the meantime, she got into and succeeded wonderfully in the Spanish immersion program, and is effectively fluent in Spanish (and of course American English).  She learned Cued Speech completely and fluently when she was six, joining the family at the Cue Camp Friendship many times, a teacher aide the last few camps.  She has learned to finger spell and knows some signs, and has joined Ben in the Deaf Access theatre troupe based in Bethesda, Maryland.  She reads broadly and above level.  She is dramatic and occasionally too sassy. She is an excellent athlete, making the junior varsity field hockey and basketball teams as a high school freshman.  She is poised and sensitive.  She is an all-American girl. She is Nancy Drew come to life!

Her relationship with Ben is sweet.  They have sibling friction, of course, but have a special love and kindness to each other.  They are physically and emotionally affectionate with each other.  They gang up on me, mocking and laughing at my ways, my goofiness.  On our travels, they have joined together as a unit, allowing me (and them!) some individual travel experience.  Because Maddie can cue, and can hear, I feel safe leaving Ben in Maddie’s care, while Maddie is in Ben’s care for purposes of protection and physical safety.

For me, luck permitted me to have a baby girl, to parent both genders in our two-gender species.  And with Maddie, fate permitted me the wondrous experience of parenting a deaf and a hearing child.  I have a unique angle on similarities and differences of boys and girls, of deaf and hearing children, of Ben and Maddie.  She provides contrast with Ben, making both better.  The contrast, boy and girl, deaf and hearing, inspires me to be a better parent, a better man.

With the divorce, Maddie has taken on the role of hostess, providing some of the warmth and graciousness that women bring to social gatherings.  As I have learned to cook and we have expanded our socializing, all three of us have improved our skills as hosts; Maddie has blossomed  as sous chef, Ben as front-of-the-house host and drinks man.  In all our adventures, she sparkles.  The theme of dads and their daughters, always prevalent in literature and life, applies equally to us.  The essence of the feminine in a baby girl, its charms and beauty, is transcendent.  And there is nothing like having some female think you are a hero; very good for us dads and our egos!

Deafness is a part of our lives; deafness is part of Maddie’s life, even though she hears.  Ben, her older sibling, is deaf. Ben uses Cued Speech, Ben has a cochlear implant.  Maddie knows how to cue; Maddie knows about batteries and infrastructure of a cochlear implant.  Maddie is hearing, but she hangs with the deaf, at the theatre or in our social events. She signs some, cues proficiently, speaks and reads well, speaks and understands a foreign language, is a scholar and athlete.

My valediction, spoken so many nights as I tucked her in, has come to pass.  Through love, effort, innate talent, luck, and lots of outside assistance, Maddie fulfilled the benediction. She is a great girl, a fantastic sister, and an elegant and delightful child.  Happy birthday to my favorite girl in all the world.  Happy birthday, Maddie!

Maddie Osborne

To show you how so very important prosody is in communication, I’ve embedded two short videos of myself cueing several short sentences, one with prosody, one without. See which one you can get the most meaning out of:

WITHOUT PROSODY

WITH PROSODY

What were the differences?

In the second video, I used prosodic markers like longer and shorter pauses, elongated words/vowels to show stress, and body language. You could far more easily tell what the most important words were, and what meanings I meant to convey.

So, would you rather watch someone cueing with, or without prosody?

You probably said “WITH!!”
I agree. As I mentioned in my first post on this subject, watching someone who cues with almost no prosody can be boring. They also convey much less meaning. For this reason, it is important to get into the habit of cueing prosody. Especially if you’re a transliterator… Different speakers will have very different ways of using prosody.

Stay tuned for part III!

My laissez faire approach to Ben, leaving details aside and focusing on the core of the relationship (and, in truth, leaving the details to his mother), starts to look like neglect when Exams roll around.  My approach is to leave Ben to himself, to respect his privacy and his developing intelligence, to see to it that he is fundamentally at peace with himself.  But this lack-of-details approach leaves me knowing too little about Ben:  what are his grades, where will he apply to college, when will he apply to those colleges, what is he thinking of studying in college?  Ah, no worries, Duke, those are just details.  The broad form is moving forward.  But am I sure?

So the details of the form are not known, but I can answer with respect to substance?  Uh, no.  Is Ben happy, is he in love, is he baffled by romance and relationships; is he embarrassed by his deafness or is he proud of the uniqueness; does he like his own body; enjoy the cleverness of his mind, get moved by events in the world?  I can guess, or intuit, answers to some of these questions, but I honestly do not know.

Failure.  Maybe that’s my parenting grade.

In many ways, it is a fair assessment.  I have walked the perimeter of Ben’s self — emotions, mind, and body — establishing a cordon, shielding him as much as possible from the pain of outsiders, but know little of what’s going on inside the compound of his persona.  The natural tendency of a teen to withhold information and to be purposely opaque, combined with the inarticulateness of a male dealing with roiling emotions, explains some of my lack of knowledge.  He does not want me to know, and has trouble expressing himself.  But part is, I do not want to know, either.

I do not want to know because I will want to fix it and I cannot?  I do not want to know because I will see a lack in Ben that will reflect on me?  I do not want to know because it will wound me and I will lash out?  I do not want to know because the inchoate thoughts will scare me?  I do not want to know because then it will confirm my failings?

Yes to all, as brutal as that assessment is.

Can I still pass this parenting course?  Maybe, if love and effort, like homework and class participation, are counted in the grade.

I love the boy, in a ferocious way.  The ferocity is mis-directed too often in irritation and disappointment, but the love is constant.  In fitful and less than ideal ways, I listen to Ben, explain to him my ideas and feelings, expose him to adventures and culture, give him affection.  I cue always to him, proud of our special connection, proud of him.  Daily I fail, daily I try again.  Is it enough?

Love and effort.  Here’s hoping these two qualities change my parent grade from “Failure” to “Needs Improvement.”

Duke and Ben Osborne, June 2009

As I progressed to the point of sentences and phrases, I started to think about what things I would say frequently during the day, especially things I would say to my son. I began practicing phrases like, "Time to go", "Are you ready?", "Where’s your backpack?", "All done?"… When I found myself repeating phrases during the day I’d add them to the list.

Eventually speed became my goal. My accuracy had improved greatly, but I was too intimidated to cue to anyone older than my son for fear of being judged. So, I began cueing to music. I’d walk for exercise and wear my ear buds while listening to music. Familiar songs with words I already knew were best. Often to get one sentence right, I’d miss the next three, but that was ok because I’d gotten one right. I was making progress and that was the important thing.

Dates in November are significant in my professional and personal life.

I just completed 20 years at my job, receiving a plaque from our government thanking me for “loyal and devoted service.”  My first day 20 years ago, a Monday, was the week of Thanksgiving; I was thankful to the government for employing me and providing a paid holiday the first week of work!

The day the government shut down in 1995, November 14, was the day Ben was formally diagnosed with severe to profound hearing loss in both ears.  I remember taking sick leave rather than going to work (where we were required to report only to be summarily  dismissed, as lack of funding had shut down all non-emergency services).

Instead of work that Monday, Wendy, Ben and I headed to Georgetown University Hospital for a scheduled auditory brain stem response (ABR) test, designed to tell us more about Ben’s apparent hearing loss.  We had been to the hospital the previous Friday, where hearing tests were attempted with Ben to provide an assessment.  No formal assessment was made, and the staff cleared the schedule so that we could have the ABR test on Monday, which required a mild sedative for Ben.  Curiously, we accepted the lack of assessment regarding whether Ben was deaf, although that was the reason we were at the hospital.  We accepted the inconclusiveness of it all — come back Monday when we can have a pure scientific evaluation, looking at the brain’s response to auditory stimuli rather than trying to get Ben to drop a block if he hears a sound.  I accepted because I was in denial.

The weird November weekend — emotionally vacillating from denial and hope to acknowledgement and no hope — passed, and we reported for the ABR test that shutdown Monday.  This time, post testing, there was no stalling by the staff as the results were clear:  your son is deaf!

Our beautiful boy, just three and half years old, was deaf!  Our boy, who two months earlier was clearly hearing (in a videotape he is responding to questions while not looking at the questioner), had moderate to severe sensorineural hearing loss bilaterally.

The rest of that government shutdown week, many hours were spent crying.  I grieved  over how I assumed Ben’s life was to have been, which it was not going to be.

Ten days later, on the Wednesday before Thanksgiving, Ben had a CAT scan at Children’s Hospital, which yielded an official diagnosis — enlarged vestibular aqueducts, formed in vitro, predisposing him to deafness within the first five years of life —  for all the good it did to attach a cause to the reality.

The world changed on that shutdown Monday, a portal to a new world opened up.

• Ben’s life was what it will be, not what it was going to be.

• The unarticulated but inherent assumptions about his future were not to be.  Vague dreams dissipated.

• Everything about his future was ours for articulation.   Dreams reconfigured.

• Communication was our necessity.

• Cueing was our (eventual) modality.

I followed Ben through that portal to a new world, a world which has profoundly shaped me.  I give my thanks daily for the joy of the physical Ben, and for who he is, the metaphysical Ben.  Deafness is just a part of his wonderful and special self.  I give thanks for the world of deafness.

The courage to be who I wanted to become.  It comes back to Ben, and his deafness.

Give thanks this special Thursday, and every day, for the beauty in the world around us and the love in our hearts.  May you too find the courage to be who you want to become.

Hamlet’s on the syllabus for Ben’s senior year. The students are going to study Polonius’ advice to his son Laertes.  Hamlet, Act I, Scene iii, Lines 59-80.

• Give thy thoughts no tongue, Nor any unproportioned thought his act. (Lines 59-60)
• Be thou familiar, but by no means vulgar.  (Line 61)
• This above all: to thine ownself be true, And it must follow, as the night the day, Thou canst not then be false to any man. (Lines 78-80)

Our assignment — provide ten to fifteen most important pieces of advice for your child as he goes off next year to college.  My submission:

To my son, Ben

• Acknowledge differences.  Focus on what you have in common.
• Live for something beyond you.  Love those near you.
• Floss your teeth.  And drink lots of water.
• Sometimes it’s like sailing.  Tack back and forth; it is often wiser than moving straight ahead.
• Sometimes it’s like hiking.  Lean into the hill and keep moving; it is often effort that gets you to the summit.
• Understand that people are weird.  Distinguish those who are the good-hearted oddballs; use caution with all others.
• Celebrate your physicality.  The body is amazing.
• Trust your instincts.  Evil exists.
• Walk in nature.  Engage in physical play.
• Treat a woman as equal in commerce. Admire a woman as beautiful in life. Accept a woman as partner in love.
• Read a newspaper regularly.
• Be physically strong, intellectual open, and emotionally sensitive.
• Give thanks.
• Show compassion.

Dad